Family

Parents play an especially important role in assisting youth with disabilities to build successful, satisfying careers. Viewed together, parents and their children essentially form a team. The youth is the player in the game and the parent is the coach. In the early years of the team, the coach is more directly involved in making day-to-day decisions about how the youth will prepare themselves for the game. For instance, in the elementary school years, parents, in most cases, attend IEP meetings and carry out negotiations with school personnel with little involvement on the part of their children. However, as a child ages and matures, to the extent practicable, the parent(s) can and should begin to step back and let the child take the reigns with assistance from the “coach”. Ideally, by the time a child leaves secondary school, he/she should have as much control of his/her life as possible, with coaching support from his/her parent(s).

Another way to view the parent/child relationship is similar to two parties entering a contract. The youth with a disability agrees to take on the responsibilities of doing his/her best to accompish whatever is necessary to succeed in school, training and other activities, including goal setting and planning for the future. The parent(s), on the other hand, agree to assist and support the youth when ever and how ever needed.

The difficulty for most families in developing such a relationship is the delicate balance between empowering, protecting and overprotecting. Parents love their children and, rightly or wrongly, when a child with a disability is involved, it is easy for parents to communicate low expectations to their child by being overprotective.

To be an effective coach, parents need to understand the types of activities and experiences that any youth, including youth with disabilities, need to adequately prepare for a full, meaningful career. They also need to understand the connections and dynamics of the workforce development system their child will need to navigate, starting with transition services while still in high school.

As children, including children with disabilities, grow up, expectations that parents and other family members have about them are powerful. It is important, therefore, that parents and other family members have and communicate high expectations for children with disabilities. Of course, while these expectations are somewhat dependent on the severity and nature of the child's disability, the important thing is that the expectations are such that they strongly encourage the child to strive to reach his/her full potential.

Having high expectations for our children may seem easy, but when a child has a disability it is very natural for a parent and other family members to try to protect the child from harm, more so than they might for a child without a disability. The challenge for parents and other family members is finding the balance between supporting while not unduly protecting children with disabilities.

In a very real way children and youth with disabilities and parents and other family members are members of a team. The team's goal is for the youth with a disability to realize his/her full potential. For a child to realize his/her full potential, it is necessary for team members, especially parents, to support the child with a disability in two primary realms.

The first realm is that of personal development. Research tells us a great deal about what all children/youth, including children and youth with disabilities, need to realize their full potential as people.

The second realm encompasses the systems and programs that comprise the workforce development system. Trying to develop a career without understanding the workforce development system is like trying to take a road trip without a map.

What kind of things should I be doing to support my son/daughter in Navigating the Road to work?

Navigating the Road to Work: The Basics

The first and most important thing is to be involved. Research shows that nurturing environments and strong connections with adults, especially parents, are essential for healthy development. Nurturing your child does not mean that you are permissive. Rather, it means that you communicate with our child, care about your child, keep track of what your child is doing, and show your child that you love him/her and will always be there. It also means that you set rules and provide reasonable consequences if the rules are broken, and that you support your child in moving toward independence—even if it means allowing him/her to fail.

The Five Areas of Youth Development provide a useful framework for guiding your support:

Do you have high expectations for your child?

Is your child being exposed to career exploration and youth development activities including such things as work experiences, visits to job sites, mentoring, and goal setting?

Are you monitoring your child’s progress in school, helping with the development of a study plan (which may include an IEP for students with disabilities) that includes tutoring or other supports as deemed necessary?

Are you providing healthy meals and a nurturing environment, and encouraging opportunities for recreation and socialization?

Do you keep track of where your child is going, when he/she is coming home, and who his/her friends are?

Do you encourage your child to participate in activities with his/her peers and caring adults that built confidence and help develop communication and teamwork skills?

Do you encourage the setting of goals, volunteering with community groups, and registering to vote?

As young people mature and seek increasing independence, their desires and expectations often conflict with those of their parents and family. This is a normal part of the maturation process that will require tact, patience, and common sense on your part. It will also require you to begin to let them go on their own so that they will be able to lead an independent, meaningful life to the greatest extent possible. This process isn’t easy, and you may find it helpful to turn to other parents or youth-serving professionals and organizations for support.

What resources are available to me if I need help?

Your child’s school and pediatrician can provide support, information, and referrals depending on the particular situation. If your child has an IEP, the IEP team should also be able to help you.

Parent Training and Information Centers are available in each state and serve families with children from birth to age 22 with all types of disabilities. They help: 1) connect families to community resources, 2) improve education results, and 3) resolve problems between families and schools or other agencies. To find the Center closes to you visit: http://www.taalliance.org/ptidirectory/pclist.asp

A local Independent Living Center (ILC) may also be helpful. ILC's are run by and for people with disabilities, including youth, and are usually nonprofit community organizations. They provide non-residential services and advocacy with the goal of assisting individuals with disabilities to achieve their maximum potential within their families and communities. They can provide assistance with access to housing, employment, transportation, communities, recreational facilities, and health and social services. To find the ILC nearest you, visit: http://www.virtualcil.net/cils/

State Vocational Rehabilitation (VR) agencies are available to assist eligible youth who will be exiting high school in a year or two to begin preparing for gainful employment.
To be eligible for VR services, a person must have a physical or mental impairment that is a substantial impediment to employment; be able to benefit from VR services in terms of an employment outcome; and require VR services to prepare for, enter, engage in, or retain employment. Some states maintain a separate VR agency that serves individuals who are blind or visually impaired. To locate your State VR agency, visit: http://www.ed.gov/about/offices/list/osers/rsa/index.html

The Protection and Advocacy (P&A) System [and the Client Assistance Programs (CAPs)] comprise the nationwide network of congressionally-mandated, legally-based disability rights agencies. P&A agencies have the authority to provide legal representation and other advocacy services, under all federal and state laws, for individuals with all types of disabilities. These agencies are available to assist individuals with disabilities in securing full access to inclusive educational programs, financial entitlements, healthcare, accessible housing and productive employment opportunities. You can locate your state’s P&A system by visiting: www.ndrn.org.

Information for Parents & Families

PACER Center@http://pacer.org
The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

National Youth Leadership Network@http://www.nyln.org
The National Youth Leadership Network (NYLN) is dedicated to advancing the next generation of disability leaders through promoting leadership development, education, employment, independent living, and health and wellness.

YouthHood.Org@ http://www.youthhood.org
YouthHood is a website that helps young people plan for the future.
Here you can start thinking about what you want to do with the rest of your life.

Kids As Self Advocates@ http://www.fvkasa.org
Kids As Self Advocates (KASA) is an organization created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities and special healthcare needs.